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Author: Denise Higgins

10th Anniversary of the National Alkaptonuria Centre UK

Posted on July 18, 2022July 18, 2022 by Denise Higgins

Shared by The AKU Society, UK June 2022 marked the 10th anniversary of the Robert Gregory National Alkaptonuria Centre (NAC) offering life-changing support and treatment to AKU patients. First commissioned by NHS Highly Specialised Services in April 2012, the NAC opened its door to patients for the first time in June 2012, and has now…

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AKU: A Rare Story of Hope

Posted on December 7, 2021December 7, 2021 by Denise Higgins
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Give Now! Crowdfunding to Support AKU Disease Registry

Posted on December 3, 2021December 3, 2021 by Denise Higgins

Our ‘mother’ society in the UK has just launched a crowdfunding campaign to raise funds for a global Black Bone Disease registry in order to gather information about AKU patients around the world in one single place.  This will allow all of the AKU societies representing patients throughout the world to make the case for access to the life-changing…

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Support a UK Pediatric Study of AKU

Posted on May 2, 2021July 2, 2021 by Denise Higgins

Tune in to hear Jess Barnes talk about the amazing AKU Society on @bbcradio4 SUNDAY 7.54am & 9.25pm THURSDAY 6 MAY 2021 3.27pm The AKU Society in the UK is raising funds to launch the first ever pediatric study into Alkaptonuria aka Black Bone Disease. A disease that, if left untreated, causes bones to turn black…

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Nitisinone approved by the European Commission!

Posted on October 30, 2020 by Denise Higgins

The AKU Society in the UK is incredibly proud to announce that the European Commission (EC) has extended the existing marketing authorisation for nitisinone use in AKU. This is the culmination of years of hard work and dedication. “We hope this decision means that patients across Europe will now begin to be able to access nitisinone. With this…

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Sonia 2 Nitisinone Trial Results

Posted on July 24, 2019 by Denise Higgins

SONIA 2 and DevelopAKUre – Results We are delighted to announce that all the data from the SONIA 2 clinical trial has now been analysed and very positive trends have been highlighted. Due to this, SOBI (Swedish Orphan Biovitrum) announced that they are going to apply to the European Medicines Agency (EMA) for market authorisation…

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RECENT POSTS

  • 10th Anniversary of the National Alkaptonuria Centre UK
  • Radio Interview with Denise Higgins on Handi-Link Radio
  • AKU: A Rare Story of Hope
  • Give Now! Crowdfunding to Support AKU Disease Registry
  • Support a UK Pediatric Study of AKU

[See All Posts]

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